I absolutely love your comment “non ambulatory patients are still patients, they’re still humans and they deserve treatment”. This is the best thing I’ve ever heard with regards to Progressive MS. Thank you, thank you, thank you❤️❤️!
Thank you so much for explaining so clearly. I was recently diagnosed with SPMS and am very scared. I had been misdiagnosed for years despite asking my doctor could i have MS (she said I was too old, I was 42). I have no family and am struggling to get my head around it. I had been using a cane for years before diagnosis. I reckon i have it at least 6 years. I am finding it hard to get information on it, and am being told 'don't google it' ! Information is power, but that long pause after you tell a doctor what you have is terrifying. I even had a neurologist from my epilepsy appointment uninvitedly tell me 'you know there's no treatment for what you have'. These beliefs are unhelpful , untrue and dangerous. Despite having SPMS untreated for years, on beginning Rituximab my lesions have slightly shrunk and no new ones have appeared. Than you for being clear, hopeful and caring. The world needs more doctors like you .
Therapy has helped me immensely. When I was released from the hospital after my TM Episode, my left leg was for all intents and purposes 'dead'. I needed a cane to get around. I bought a Star Wars cane,because I figured I was stuck with this,so I might as well have fun with it. Two months into PT,I damn near don't need the cane anymore. That's before my planned DMT in the new future. Once again, awesome video Doc! You keep me going,Man!
Thanks for this video. Hopefully, Pete will watch it and his concerns about my progression will be relieved, I am almost angry about my🎉 previous neurologist not recognizing the need for a DMT! I would not want to D/C my DMT because of the possibility of worsening progression. I will deal with the side effect of a running ̈ nose to hopefully prevent/limit any rapid progression! HOWEVER, I MIGHT BUY stock in Kimberly Clark!
Oh nice! Thanks so much for discussing SPMS, as you did. It's so very scary and lonely out here. Generally, we don't seem to get the attention we once did early in our disease. There can be a sense of failure involved. And in so many ways, we just sort of disappear. With kindness.
Michael Barnes I agree Michael we do seem to disagree with SPMS. All of us need to start getting more vocal, especially with our Neurologists. I for one, will be going back on a DMT, now that I have listened to Dr. Booster.
Yeah, I was just complaining about feeling kind of invisible: as long as I'm talking sense, no one is giving me any discounts for fatigue or brain fog or semi-parallisis or constipation, and I hate to discuss it with them and screw up their day. Identify with you in Jerusalem!
oh no! Don't let doctors or anyone else disrgard your jouney. You are dealing with a real entity, and you have to fight for your right to be heard and treated. I have been lucky to find doctors that are MS specialists (that is a key - not just a nerologist - but find a MS specialist) ... You are valued - you may not feel valued - and that is why you need to stand up as tall as you can and politly push your doctors to see YOU. They are overworked and tired, you need to get their attention. Don't give up on yourself because of circumstances. We are out there, we hear you... We share in your journey, becasue it is our journey also. stay healthy and live your life!!!
I wish I had been offered medication. I'm in the UK and way back 20 years ago when I was RRMS I was told that there were no drugs to help. Now I am SPMS same answer. Wish I knew then what I know now but I trusted the NHS to look after me. I have not given up. I have complained to my hospital. Demanded and getting my first MRI. Will be seeing the Neurologist I haven't seen in 15 years. But will I be brave enough to demand an explanation/medication? I will get back to you on that one as I'm a bit of a wimp!
You hit almost every single nail on the head. What a great Doctor you are. If only we all could be so lucky. Thank you for making these videos for us. God Bless you.
I had a neurologist appointment 3 days ago, my Neurologist said it’s looking likely that I have SPMS. He’s arranging an MRI to see what’s going on. I’ve been on Ocrevus for the last 21 months, before that I was on Tysabri but I was building (?) antibodies against it. My fatigue and cog fog is just awful and my walking is getting worse. I hope to get some answers soon. But definitely don’t want to stop treatment as I’m only 47. I think I’ve had MS since I was 14 as I had experienced intermittent vision loss when I was running… I didn’t get diagnosed until 2021, when the right side of my body went numb. I have permanent nerve damage in my right forearm and hand. I’m still struggling to figure out what’s normal and what’s not. Your videos have been my lifeline, so thank you Dr Boster.
Actually this just came up. My neurologist last month said I could stop Copaxone because of my age (69) and because I now am in the SPMS phase. I got a second opinion and he and the neuro conferred and said it was up to me and they would support whatever I chose. I had an intuition that this might be a bad idea to stop, and your 2 videos have helped me make my discussion to remain on Copaxone. I've been on it or about 15 years with a break in there of about 4 years off -- I told my pc dr. who wanted back on it during not taking it that if I did mri's and there was new activity (no symptoms) I would go back on and there was new activity so I did go back on about 4-5 years ago. I'm glad I'm on it -- I just have to work on quality of life issues now and I appreciate your videos a lot . Thank you for making them. FYI I've had ms since I was 28 when there were no mri's and it initially diagnosed as transverse myselitis or ms. So had RRMS for many decades with flares but was not treated until 15 years ago when a flare happened -- went to several neuros and they said ms -- and that's when I went on Copaxone.
Dr B thank you for all that you do for this Global Village! You are a truly caring individual! Your videos have been my lifeline in coping with my disease. I had a long period waiting for my clinic appointment and your videos have gotten me though. We all appreciate your time with us! You are making a real difference in the lives of all of us.
Hey Dr. Boster! Love your videos. I'm playing catch-up on your content, so I'm late to the game in answering the question you asked on this one. I do NOT agree with stopping therapy and I have a very personal reason. I'll be 47 next month, have had MS since I was 16 (many years and much cognitive damage between my first optic neuritis in 1988 and final diagnosis in 2004) and was told by my neuro I had progressed to SPMS 'officially' back in 2015. I was immediately taken off of my DMT and given no choice in the matter, being told no therapies were effective for SPMS. I also stopped receiving MRIs and basically dropped off the radar. I felt like persona non grata, that's for sure! In January 2019 I had my first MRI in FIVE years, at my insistence, since it had been so long and I was having some worsening symptoms. The MRI was done with no contrast, but even still, my neuro called me just two days later (which never happens) to inform me I had at least six new lesions and he felt I should go back on a DMT asap. I was thrown into a state of confusion, having been told by him perviously that no DMTs worked for SPMS?!? However, I was happy to feel like I could suddenly take charge of my own disease course again! He changed my disease type back to relapsing MS, even though I don't think that's where I'm truly at, but honestly I don't really care what it's called, it is what it is. I had my first two half doses of Ocrevus in the latter part of May and am hopeful I can return to a state of disease stability. I work on all other areas you encourage - I've never smoked, I exercise daily, I eat well and now the DMT situation is back on track, so I'm doing everything I can to keep the brain damage at bay. Thanks for all of the hard work you do on your own time to encourage so many of us who really do feel like we're out here struggling on our own in the wilderness for the most part. What a difference it makes knowing we have someone fighting to empower us with knowledge!
I could tell that you put a lot of thought into these two Dr. B...Well Done! AND...They are highly relatable across the MS spectrum. I hope that when you categorize them on you site you don’t confine them only to a section on SPMS. Maybe in SPMS and MS Progression categories so that way nobody misses viewing them.
Hey doc! My latest VA Neurologist just told me that I have “chronic progressive ms” and that there are no medications for that condition! We got us a real prize winner here!
Well, now that I know everything you have taught me, no way would I stop my DMT! Seriously, I would be completely lost dealing with MS without you. I have learned so much, and now know how to be proactive at my clinic visits and take charge of my care. I have felt for a while more of a slow progression than problems with relapses, but have been scared to mention it at visits because of my fear of progression. I am 4 for 4 though and I am counting the days till I get my Ocrevus infusion next month!
No, you said even at 60,I am worth the DMD and I agree. My mom just had back surgery, I am 56 with my meds I could not be there for her. Although I cannot give her constant care I can visit and help staff help her. Thank you and Dr. Nicholas for telling I am worth it. You both keep me going.
You do what you can and that is all you can do and that is enough. you have a hard road, but take it one day at a time, 1 hours at a time if need be and what is good about that hour? Find the good and keep your spirits up. Good luck and keep up the good fight - your mother is lucky to have YOU in her life.
Thank you so much for these clear and informative videos on SPMS. I think I have learned more from these than I have from years visiting my MS neurologist. You have given me new hope, Dr. Boster. Thank you again.
Great videos! Obviously, stopping my DMT if I haven't had an attack for several years is like removing air traffic control at an airport because there hasn't been any plane accidents at that airport in the last few years. A disaster waiting to happen.
I'm 30 and although the thought of taking meds for life is often depressing I'll never quit my DMT. I had a taste of what having a numb and not responding leg is, and I will do everything to avoid it coming back again. Also hopefully in a few years' time we will have some news on the re-myelinating field!
To answer your question "imagine you're 55 years old, etc"....First I don't need to imagine. . I am 55 and I would absolutely NOT consider discontinuing my medication BECAUSE at 52 I did just that..... I stopped my meds and within 18 months I had a "steroid-worthy" RELAPSE. I stopped the meds at 52 because I hadn't had a relapse in 6 years and figured I was stable....well it sure seems the meds were the thing keeping me stable. two thumbs up on your videos.
I enjoyed this two part series Aaron. This was a strong case made to ensure you have good MS Neuro,on a DMT and take control of our health using your 4x4 practice. We have to do our part,I am so much more fatigued than ever before but i only sleep seemingly at dusk. It's very odd and I have a significant amount of pain when the weather changes I notice,is this common? Your transparency in all things MS is what drives people here!!
I like the idea of treatment as soon as possible. I was declared MS benign 7 years and stopped all DMT. I believe I started to feel better because I stopped working a very stressful job. I can’t get my doc to do a MRI of the spine and have noticed new symptoms with my kidneys and legs. I wish doctor would listen instead of looking at the patient we don’t know anything. Love the videos kept it!
You, sir.. So much gratitude for doctors as yourself with the genuine drive to help others heal. Diagnosed 12 yrs ago and i have slipped into spms. Trying to recover this flare from 8 weeks ago.. Im not bouncing back as quickly and in all honesty - im not sure ill gain back what i have lost this timr. Regardless, your information gives me the strength to try another dmt. If i continue in this pattern, i wont be able to care for mysef. I'm 33 and would love to be able to care for myself for at least a couple more decades. I appreciate you. We appreciate you! 💜
Hello everyone, I would not want to ever stop taking my DMT just because of my age or MS type. I have enough on my plate trying to reach my 4 for 4 without removing the foundation that I am using to built my life with MS.
With MS i found out, i have better days , once i understood that i have to find a "new normal" But the prosess of accepting that MS will set some limitations and alter your plans, is hard and takes some time 😊 i Will never give up medicines or trying my best every day. I love my life, despite of this awful desease. Thank you to all neurologists who is working everyday to make our life better, without you we would not have much❤❤
Great video Aaron! Thanks a lot. I would not stop Ocrevus. My doc says it's working! And now is approved in Argentina. Despite this, I'm fighting an strong depression caused by the divorce. Three months on Bupropion, but my soul is broken. It hurts so bad... And all the symptoms are worst. 45 years old with not a clear future in mind... Regards from Argentina.
I am going to be 54 in September. I am on Ocrevus. I will not stop my therapy, because it is helping me. It is giving me a little more stamina and some of my symptoms slow way down. Stopping therapy now, would be it!! The MS would win, and I won't let that happen!!
My neuro suspects secondary progressive. My mS Symptoms started when I was 13-14. Diagnosed at 27. 32 now. Nothing new on my mris since started tysabri 3 years ago. 🙌🏼 staying on it
I have stopped the DMTs for the exact reasons you said. Age, I'm 71 and that drugs wouldn't work. I was on ocrevus and felt I declined. I will talk to my doctor about getting back on
Thanks! Those 2 were scary ones, cause I'm 56, was diagnosed a year ago, undiagnosed for only God knows how long, staying home more despite improved MRI results, and hating to hear prognosis scenarios. Better to know than not to know, though, be 4 for 4 and work out life solutions, for things like attending graduation ceremonies for the 22 out of town grandchildren, for example. Shavua Tov from Jerusalem.
This video almost made me cry! I spoke to my neurologist yesterday. Although he two months ago told me he wanted to change my DMT to a newer drug, he now said I have SPMS without having a MRI (1,5 years since last time) and wanted to stop treatment. I was so upset! In a telephone call! He said DMT doesn’t help with SPMS and besides, it’s too expensive (government pays). I do not want to discontinue! I’m currently on Tecfidera and have no side effects whatsoever. What to do? We only have one neurologist here. I’m thinking of moving address… 😳
(PRMS dx 2009) I have that 1st trifecta-fatigue/cog/depression. I am now awaiting to have TMS with hopes of easing up some of fatigue, or cog or the depression. Transcranial Magnetic Stimulation is my only hope to lead a normal life to relenquish this major depression. I just hope I can get through the treatment of 5 days a week for one month. Not going to be easy.
Thanks for another brilliant video. No, I would not stop taking medication just because I had not had a relapse for years. The medication is clearly working so stopping it might allow for disease to reactivate.
Thanks for mentioning the idea of going off DMT after age 55 if stable for 5+ years, and how it's not a good idea! I'm stable (3.5 years & counting) and 44. I'd love to go off meds, but not at the risk of progressing. Thanks again! 👐 ⌚👟
55 maybe too young to stop my DMT. I’d probably discontinue at 65 though. Is there any truth to the claim that RRMS patients typically progress into SPMS at around 15 years after their diagnosis?
I am PPMS and do not want to take ocravis. My doctor is going to try the plasma transfer. I am up for this.. crossing my fingers. Thank you for your video's doctor Boster!
Thanks Dr, Based on what I heard - Take most advanced DMT early on. For PT, we have to follow Escalation Model, do simple exercise to start with and then move on to tougher ones progressively (Squats/Lunges etc)
Hi Dr.B, thank you very much for these 2 videos, very very informative! I would like to ask you something, what can someone do if they cannot find a nearby MS physician or neurologist to continue a DMT because their MS is considered very mild but cannot afford to travel? Is there something you could suggest?
2 days ago I was told because I have no MRI activity and lemtrada didn't work for me, that my doctor can't do anything else for me. He just told me to do intense physical therapy and occupational therapy, pain management. Sent me on my way. Didn't even schedule a follow-up. I guess he will be looking at my lemtrada labs and that's it.
Thank you for this great video. I want to be on a dmt but took lemtrada and continued to progress and am much worse post dosing. Are any dmts appropriate for post lemtrada patients with compromised immune systems? Are treatments ok when your immune system is so compromised?
Dr Boster, please give a link to the study you reference where 1/3 of the over-55 non-drug group had disability progression. I cannot find it and I'm assuming this is not the DISCO-MS study, since from everything I can find it is still ongoing until 2021.
I just found out, that I am no longer RRMS, and now I am at the SPMS stage. My Neurologist said, because my MRI came back, and showed no activity or inflammation with no new lesions from my last MRI that was done 4 years ago. I know talk about being neglected right by Neurologist in my neck of the woods?? 🤷♀️ 🤦♀️ Anyways now she is telling me that I do not qualify to go on any DMT, because she said it will not help me in any way, and also it won’t be covered by insurance from the Canadian Quebec Government. I don’t believe this is true, after watching all your videos for so many years, and especially the one on SPMS. Now this makes me really upset 😢 and heartbroken 💔 to find out that I cannot get on a DMT, to slow this monster down. I’m 45 yrs old, and I have a 3 kids ages 13,19, &22. I cannot go out like this, and refuse to give up. What can I do about this Dr B? I really need some advice, and help here 😢💔🙏
My question is in two parts. The first part is would remylinating therapy be more like getting rid of the stalagmites that are present, rather than adding water to the pool? And my second question as to do it the same thing, wood neuroprotective agents me more like something that protects against stalagmites from forming rather than plugging the pool. I thought the pool was going to leak as we age no matter what, except for maybe the Fountain of Youth.
Dr. B the internet is buzzing with talk that Selma Blair is in Chicago doing HSCT with Dr. Burt. My neurologist says absolutely do not do it. What can you tell us? I value your opinion a lot. (By the way I tell everyone I can watch Dr. Boster. I even told Selma Blair on Instagram to look you up!)
Dr. Aaron, Thank You very much for the information. I will always continue with DMT as I age. I encourage people with MS to always take DMT the Dr orders. We have to hit MS harder then it hits us.
The chronic severe pain I have in my legs is definitely affecting my quality of life. I have a pain pump with nothing and can take 3 blouses in 24 hours. The morphine used to completely relieve my pain. However, it’s not doing that now. I’m in constant pain 24/7. The morphine just takes the edge off now but the pain remains. As I type this my pain is an 8. I took a bolus approximately 4 hours ago but it didn’t really help.
A Nova Scotian here and very thankful for your ever informative videos. I know you think we're nuts to not take a DMT if it's available to us and I agree with you. I've had rebif, tecfidera, gilenya and most recently, I've successfully completed second round of Lemtrada in August 2018. I have my annual MRI scheduled for next month but luckily have not seen any new symptoms in two years. I assume the Lemtrada is working as it should. Should I continue onto another drug or am I covered by Lemtrada?
Well before this video I was going to stop my medicine...I haven’t had a relapse in 3 yrs my brain MRI has been stable...I am 55 and found out I had MS in 2015..no doctor paid attention before that. But I do have secondary MS now.
I am 55 years old and the answer is NO ABSOLUTELY NOT. If something is working don't mess with it. Leave well enough alone. If at any point in time the dmt is not working as good or not at all, I don't believe they should stop taking dmt all together. They should work on finding a new dmt that works for them like the previous dmt. I was taking Abagio but it stopped working and relapses started coming more frequently and more severe than before. But now finding something I can take that doesn't cause me more harm or my weird metabolism can handle is getting to be a problem. Same with pain medication they wanted me to try different drugs than what I was taking after my medical records showed I could not take a 97% of what is out there ( one almost killed me, spent a lot of time going to ER due to slow breathing or allergic reactions). I'm now in palliative care and they finally put me back on what I was taking at slightly higher dose. And my pain is back to being tolerable again, instead of ( scale 1 to 10) some days it would be off the chart between 12 to 15 totally debilitating, now I'm at 7 to 8 which I can tolerate with lower dose for break through pain when needed. Dmt has been my biggest problem my grandmother, great auntie, 3 cousins and myself have this strange metabolism that drugs that make other people sleepy make us hyper, drugs that make other people hyper can make us sleepy. Some can just out right kill us. So back to the drawing board, its frustrating, disheartening etc trying to find something that the side effects won't cause me greater problems than the MS RRMS. Or my weird body can tolerate. One the risk of developing something worse than MS I refused to take . I just do not feel the benefits are worth the risk. And now I was just diagnosed with Polymyositis on top of the MS. Yep not the news I wanted to hear. So now more stress , how am I going to have to adjust my life to compensate for not just MS but the Polymyositis. I know eventually I will figure it out but in the mean time it's kinda stressful. And how will the MS dmt effect the polymyositis. I take low dose dose pack of steroids for inflammation but every time I do it makes my relapse worse, so I have to decide is it worth taking and sometimes the risk is worth it because inflammation is so bad. Sorry so long and just flapping my gums away but you asked and this is my answer. Thank you for the videos.
Doctor Boster l have now been diagnosed with secondary progressive ms but my neurologist isn’t putting me on a dmt ? Why is this please ( im in the uk ) . Thank you
this happened to me.. only the doctor said the medicine wasn't helping slow down the progression.. so I stopped,, of course the illness progressed to SPMS.. I am on Ocrevus now.. doing fine.. still ambiuilatory.. with help from a cane when I leave the home.. is it possible for someone to have RRMS ntheir whole life if they use DMTs?
This is a good subject to cover. I did not get disability approved in time and my credits expired. I didn't know how or have anyone to help me and did it all wrong. I can cover how NOT to do it.
I'm 60 with over 10 years without a relapse. I used to think I world quit my DMT, especially because I suffer so much once per week. At this point, why mess with success and why not continue with a potent weekly antiviral?
My world is getting smaller. Nearly 5 years past lemtrada, now taking pregabalin, for legs, now on a cane, Been asked to consider siponimod another dmt but not sure.
I would not be ok with stopping DMT....if anyone knows a person with a chronic condition (say bi polar or high blood pressure) and are taking medication...how many times do you come to understand that the person quit taking meds because they "feel better"...of course they do and then they don't. With MS, I know any errors in judgement or lapses in treatment might result in disease activity...with MS, that disease activity is permanent....and THAT is the crux of the debate...there is no debate in my mind because the patient bears 100% of the burden of proof/evidence and while others do their best to show empathy and be supportive....no person can understand what it is like to wake up and your legs feel like they weigh 300 pounds or you forget why you walked into the room or why you missed the deer standing at the edge of the road as you drove by. I have very strong feelings and convictions on the subject as you can probably tell by the tone of my response.
Can you make a video about people with spms that is inactive? I cannot find any information online. I cannot get much information from my doctor. I was told there's absolutely nothing that I can do and I guess I'm just waiting for something to come out or for me to just croak?
No I wouldn't stop medication. I would assume I was relapse free due to the medication. Of course I have the luxury of doing this in Australia as the medications aren't controlled by insurance companies
Stop at 55?!? I'm almost 56, and I was just 'officially' diagnosed two days ago!! I have to start a DMT!! Not stop one. PS I'm 3 for 3, need that DMT to make it 4 for 4.
What if one has had limited DMT's early on in the diagnosis then stopped and was RRMS now Secondary Progressive Advanced MS, do you think the treating plan will help now? Please help!
You are in the same position s union I am in I was dx with MS 2013. I had Avonex shots until 2013. I wasn't getting regular blood test to monitor the effects of drug so I stopped taking . To me I have progressed to probably Secondary MS. I was just walking last week. Now my gait is very slow. I would like to try for the Orcrevus
Noway would I ever stop taking medicine. My reason is simple at least something is in my body "protecting" me. I struggle with this because my mom has had MS for 39 years. She is a nurse practitioner who knows it all. I feel she's given up although stable if that makes sense. She hasn't been on meds for at least 8 years, again I state she's stable. I don't like it!! Myself as you know have infused and completed both rounds of Lemtrada even myself i feel naked without taking any meds even though g-d has blessed me with a second chance with disease. Time after time I impress my Neurologist and myself tbh on how far I've come and continue to go positively. EDSS was 7.5 now about 1.5 so.... I just want my mom on something
